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Reply by jaindough
14 May 2014, 8:36 PM
Last night was a total wreck.
my mother said things to me that were so hurtful and they will stay with me forever, I think.  She is so, so very mad, at her situation, at life and at not being home. She is taking it out on those she loves and I do not blame her.

every evening is when mom seems to expect to be going home. It makes her very combative, angry and verbally abusive. When I arrived in the late afternoon, mom was sitting up in bed, snacking. I told her "I am changing your pyjama now" and she pretty well ignored me. I was thrilled to get her in a clean nightgown! Then I pressed my luck and said "now I'm going to change your bed linens" i gently propped her up in the chair next to her bed and got to work changing sheets. She started making demands to move items from her bedside table closer to her. I obliged until she asked me for the flower vase. I said I didn't think it was a good idea because it was glass and she may drop it and hurt herself. She got mad. I still refused. She was livid. I think she was under the impression she was in a wheelchair, so she started pushing her chair backward with her legs To get out of the room. She started yelling at me, saying she wanted to leave. She pushed me and tried to stand up. I rang the nurse for help and they came to calm her. She stopped her tantrum and sat in her chair and ignored me and cussed me out under her breath.

one of our family friends arrived then, and I took the opportunity to let him visit with her and I left the room for a ten minute break. When I came back, she was tantruming again and our friend was beside himself, not knowing what to do. She was trying so desperately to get out of the room. He sat her down in her roommates chair (thankfully, he was out of the room). We sat with her while she cursed us both. I gave him a hug and told him to go home. Mom said "you can wait til you're blue in the face, I am not going back into that @&$! Bed." 

Last night was was the first time she complained about her head hurting. We gave her Tylenol, but mom said she was in a great deal of pain. I told her not to wait too long before asking for something when she starts to feel pain. She said she thought it would go away on its own.

ias mom stubbornly sat up in her hard backed chair, I pulled her nurse aside and explained her stress and anxiety are so high in the evening that, even though mom refuses anti anxiety medication, we should try to administer it so she can have a restful night. He said he agreed and he would try to present it as a medication that would help with her pain. He brought her one and she took it. We waited for it to take effect a bit, she still cursed me under her breath the whole time. I asked if I could help her lay down as I could see she was very uncomfortable. She swore at me. Finally, she yelled at me about how much physical pain she was in, so I called the nurse and he brought her a half a morphine pill. shortly after she asked to be placed back in bed so we both helped place her back in bed. 

she was much more relaxed and was getting sleepy. I sat with her and she chatted about pleasant things with me. I held her hand as she relaxed. Then I tucked her in and left for the night.

this morning she said she had the best sleep ever and felt like a million bucks today. I spoke to her day nurse and mentioned the evening stress and anxiety and the doc will be made aware about trying to make an anti anxiety med a part of her evening routine.

at the suggestion of my aunt (who is a nurse) I shortened my morning visit today' and will have a shorter evening visit as well. I really needed a rest after yesterday's stress. I spent a pleasant morning with mom, helped her eat lunch and then headed off after settling her in for a nap.

this afternoon moms assigned social worker called the house and we talked at length. We discussed the logistics of potentially having mom home for a few days. She would have to be transferred by ambulance. I would want a nurse present with us round the clock. We would need a medical bed, wheelchair and commode and we'd set it up here on the main floor. I think it is doable for three or four days, I don't care about the cost. I just worry that after the stay she would refuse to leave again for hospice. I know part of her understands this is what would need to happen, but another part of her cannot compute or refuses to accept that as reality. This is my dilemma.

yes, mom wants to desperately go home, and this has been her goal for months now. But will it really benefit her if she has to go through the agonizing process of leaving again for hospice? I don't know. I am meeting with the palliative care coordinator tomorrow with mom, and I am also meeting with the social worker to talk further. 
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Reply by jaindough
17 May 2014, 10:29 AM
After discussions with the social worker and mom's physicians and nurses, we have decided that bringing mom home, even for a short stay, would most likely be of no benefit to her, seeing as she feels she would be returning home to live as she did before she fell ill. It would, in all likelyhood, cause her much more stress and confusion and I think she would be angry to not be able to do what she feels she is capable of doing but, in fact, cannot actually do. She still talks about going upstairs for a shower or going down to the basement to get an item. Is this denial or just confusion? She needs help to stand, help to get to the bathroom, help to sit up.

My great difficulty now is in convincing her to voluntarily go to the palliative care home. I met with the coordinator and it is truly the very best care I can get for mom. Their care team is wonderful and they go to great lengths to fulfill the patients every wish and make them as comfortable as possible. I can also bring the baby as they have equipment and facilities for him there. I am not allowed to bring baby to the hospital. I am using this as a means to convince mom to go to hospice.

We had discussed hospice before and I know that is where she wants to go, ultimately. The hitch is that she feels this is something for much later on and she refuses to even discuss it right now. I feel we are losing time; time we can spend together comfortably as a family. My son, husband and mother and I all together. I cannot reason with her. It is very difficult.
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Reply by marstin
17 May 2014, 3:09 PM
Hi jd,

With the cancer attacking the brain your Mom is probably not able to actually understand her limitations. I'm sure she truly believes she can still do all of these things but you clearly know that it isn't possible. It could be that she believes that if she gets to your place that everything will be normal again. I don't think it's uncommon for people that are very ill to become angry and combative and revert to being child like.

I don't know that you will be able to convince your Mom that going to palliative care is the right thing to do. It's possible that you will just have to take the parent role and do what is best for her. My guess is that she will adapt to the change and it is a great place to be. Being able to be with her grandson will possibly take her mind off of the need to get out of there. I know how difficult it is to suddenly have to switch roles with her but you are clear headed enough to know what is best for her. As much as you want to convince her to make that decision, it might be time to make it for her. You may find that she settles in really well. She may love the amount of pampering she will get. I remember so well having to make those difficult decisions with Len and my Mom but I knew it was for the good of all. Maybe you could tell her that you have to make some changes at home before she can go there so she has to go to the other place first because they need her bed in the hospital for people sicker than her. This might help her to accept that a move is necessary and that she is helping someone else out by moving. I know this is difficult to do because you don't want to go against her wishes but it's possible at this point that you have to do what is best for all involved.

Hugs,
Tracie
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Reply by NatR
17 May 2014, 3:28 PM
Morning JD

reading your notes I am in admiration of your ability to see the big picture and know what is best - as Tracie said - you are really doing what's best for your mom and more importantly you are making decisions that are best for your own little family - and saving yourself stress and exhaustion  trying to please your mom by giving in to her wishes - and as Tracie said your mom isn't capable of clear thinking or decision making 

I applaud you - and am glad to know things are starting to fall into place.
be strong and be there as you can for your mom !

being able to bring your son and visit your mom - as well as being supported and considered by the hospice facility sounds like the perfect thing for everyone

my thoughts are with you:)
hugs NatR 
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Reply by jaindough
18 May 2014, 9:39 PM
oh boy, here we go.

we are bringing mom home for a short three hour visit tomorrow afternoon. i am so very nervous. her doctor felt it was necessary for mom to say bye to her house and have some closure. I am scared mom wont want to leave again, but she is mad no matter what so at least i will have peace in my heart knowing we brought her home at least one more time.

i cooked her favourite soup and we'll have pasta and i got a special, rich chocolate cake. i also got champagne. i know she wont eat a ton, but she'll be happy to see a nice spread for the special occassion. she will also be so happy to spend time with the baby in her own home.

wish me lots of luck! 
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Reply by marstin
19 May 2014, 1:32 PM
Hi jd,

Just wanted to send you a quick note to wish you luck today. Maybe this is the kind of closure your Mom needs to make her happy. How incredibly thoughtful you are to put together a meal with all of her favorite things even if she doesn't eat much of it. She is very fortunate to have such a kind, loving daughter like you. Although she might put up a bit of a fight when you have to take her back to the hospital, you will know that you did your best to make her wishes come true. Who knows, she may be very accepting of it all after having some time at home.

Hugs,
Tracie
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Reply by NatR
19 May 2014, 2:03 PM
Dear JD

let me add my best wishes to you today. I echo Tracies thoughts and comments

you are indeed  a thoughtful and loving daughter - you are!!
you are giving your mom closure and an important step in the process she is going through

i can tell you are a kind and loving lady and you are thinking out each step with your mom in mind:)

best wishes and  hope all goes well.
sending my thoughts your way today
sincerely,
natR 
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Reply by jaindough
19 May 2014, 11:12 PM
It went so well! I was so nervous but it all went very very well and mom was so happy!

Mom was really irritated this morning and grumbling at me a lot and it made me feel a bit nervous about how the afternoon was going to go. The nurses set up transportation for mom as she had to be sent by ambulance home since we have several stairs to get in the house. Her doctor made a point of reminding mom that this was only an afternoon visit, which calmed me a bit, but then mom later said how she wanted to be sure to pick out a nice bread to go with the meal. I said "I'll get whatever you want, mom" and she said "NO. I am going to pick it out MYSELF." I thought, "oh here we go."

They would not let me ride in the ambulance with mom with a wheelchair in tow, unfortunately. I had to wrangle that thing into my trunk and race home to receive mom. After all that struggling and wrestling with the wheelchair, we never ended up using it. At least we had it just in case. Mom felt a bit weak so we didn't try it. I had set the table for us to eat at, but we ended up all eating in the living room, which was just fine because mom was comfy.

The EMTs set mom up in the La-z-boy in our living room and she seemed comfy. I had brought her some cozy pj bottoms and a t-shirt for the outing so she was comfy and warm during our visit. 

She had some white wine, some cheese and cured meats I had set out and a bit of our soup and then we skipped the main and went straight for the chocolate cake I got us :)  That was fine with me.

Initially, mom told me not to invite anyone over as she wanted it to be just me, my husband, the baby and her. Then when we got to the house she said "Well who else is coming?" so I called all her friends and left messages. Four friends showed up and shared a glass and a snack with us. It was nice. It was good to see mom smiling.

When the time to go back to hospital started rolling around, I was starting to get nervous again. I called the ambulance folks to head to the house for the designated time and I didn't say anything to mom. About 5 minutes later she said "Well we better make sure to call for the ride to show up on time." HUGE RELIEF. The ambulance showed up and mom contentedly headed back to hospital with them. The sun on her face as they readied to load her into the ambulance was so nice. She was really happy.

I then thanked everyone, ushered them out, left husband to clean up a bit (god bless him) and wrangled the huge wheelchair back into my trunk and headed to hospital. I wanted to make sure she was settled in nicely for the evening. When I walked into her room, she was happily having a snack and she was genuinely happy to see me. She said how good it was to go home.

I gave her a big kiss and wished her goodnight.

I feel so content.

 
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Reply by marstin
19 May 2014, 11:40 PM
Hi jd,

I have to admit that your posting brought tears to my eyes. It sounds like it was an amazing day for all. You are incredible!  To be able to put that all together and even call some of her friends to come over was awesome. I'm sure that she was so happy to have had the opportunity to have a day at home surrounded by so much love and attention. What a memory you have given her. All I can say is wow!

Hugs,
Tracie
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Reply by NatR
20 May 2014, 2:55 AM
Dear JD;)
a miracle of a day from start to finish
the kind of thing you see on tv and wonder how did they pull that off !!

i am with Tracie on the WOW!
getting friends to come when you called was a really incredible thing also
- I am blown away;) absolutely

job well done
you are doing such a great job;) and hour by hour day by day it's all falling into place
sending you hugs and Peace!
PS your hubby is a gem - keep him;) (smiles ) 
natR 
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